Tales from my eventful and ongoing journey as a Generation X caregiver for my father and as an advocate for Lewy Body Dementia caregivers.

Thursday, March 13, 2014

Dementia Mysteries.

A few years ago, we went to visit my father the day after Thanksgiving.
When we walked into the living room of his AFH, he was sitting at the end of
the sofa with a blanket over his legs, looking alert. I sat down beside him and
said hello while rubbing his arm, and my husband leaned over him and put out
his hand for Dad to shake it. Dad looked at him, took his hand, and then didn’t
let go after the initial shake.

He kept holding on to my husband’s hand, not painfully, but definitely
firmly. My husband stood there for several minutes, talking to my dad, allowing
his hand to be held until finally Dad’s grip loosened a little and he was able
to pull away and sit down. At the time, I thought it was a reoccurrence of
something Dad used to do a lot with his aide and friend, Del. They used to have
a strength contest of sorts, with Dad squeezing Del’s hand while Del laughed
and squeezed back. After having attended Teepa Snow’s workshop, I now realize
that something else may have been going on.

Our hands essentially have two main functions or abilities:
fine motor skills, with the thumb and first finger like grasping items and
manipulating pens; and strength, with the last three fingers and heel of the
hand allowing us to apply pressure and open jars. People with dementia lose the
fine motor skills portions of their hands relatively quickly, yet they retain
the strength portions. What is more, it feels good to them to use that strength
portion; they tend to grip tightly what they can – hands, arms, chairs – and not
want to let go because it is soothing. I was amazed to hear this, and thought
immediately back to that day with Dad.

I learned so much about the physical effects of dementia,
just in that six hour workshop. Another thing I didn’t know about dementia is
that it affects the sufferer’s sight, not in terms of clarity of vision,
although age has probably already affected that, but in terms of range of vision. Someone with dementia
goes from having normal peripheral vision, to a narrowed field of vision the
equivalent of wearing a diving mask. It then narrows even further to the
equivalent of goggles, so that they can no longer see anyone approaching them
from the side.

They can only see what is directly in front of them; if they
are looking down, they can see their plate, for example, and if they are
looking up, what is in front of them seizes to exist. This is one of the
reasons why talking to someone with dementia while they eat is not a good idea;
they will look up to see you and forget about their plate altogether. Or trip
over something on the floor while paying attention to the person in front of
them. This is also why dementia sufferers become frightened or aggressive when
a caregiver approaches from the side to change them or feed them – they just
can’t see it.

These are only a few of the many, many changes caused by
dementia, changes we as caregivers need to know as much about as possible. Just
think how many incidents of aggression, episodes of intense emotion, and occurrences
of ‘bad’ behavior could be avoided if we all understood exactly why our loved one was reacting the way
they are. Dementia is a mystery, following it’s clues and understanding it’s
hints is our main job as caregivers.

5 comments:

great post full of insight for me. I always wondered why some elderly have the grip of death on me. I equated it with claws and being mean- It Hurt!-you have taught me something!Keeping my mouth shut has been So hard with my mother while she walks or eats - i equated it with being able to do only one thing at a time or she would trip or choke. I have noticed she is unable to follow where I point.thanks for this post

I remember getting my mother a cataract operation during the very early stages of her disease. I thought to myself ... at least she'll be able to SEE things clearly. Little did I know how complex sight can be. Technically speaking, she continued to have very good vision -- but had NO idea what she was looking at. Toward the latter stages, I'd hold up a photo of her as a younger person. She not only had no idea of who it was; she did not know WHAT it was. That's when I realized "sight" required a great deal more than a healthy eyeball. I appreciated your post. Barbara Erakko

Thanks for the post. As someone with a grandmother who is currently suffering from the early stages of dementia it's nice to know I'm not alone. It's such a heartbreaking condition that I hope we find a way to deal with soon. Thanks again for the post, Joy.

Thanks you so much for sharing this. My grandmother has been forgetting so easily lately, I thought there was no way it couldn’t be Alzheimer’s. From your signs, I think it is. I hope we can get her some help soon.

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LBD Caregiver Link

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Toll-free LBD Caregiver Link – 800.539.9767

LBD families and caregivers can connect directly on a regional basis, through the LBD Caregiver Link, featuring “Lewy Buddies.” “Lewy Buddies" are experienced LBD caregivers who share their time and experience with LBD families by:

vListening compassionately and confidentially to the challenges of LBD families and sharing their own personal experience with LBD

vOffering emotional support

vReferring families to additional LBDA programs and services as appropriate for their needs.

While Lewy Buddies are not able to provide medical advice and are not medical professionals, they are typically well informed about LBD through their personal experiences and volunteer training with LBDA. They may also be able to help identify information and community resources concerning the diagnosis and care of a person with Lewy body Dementia.

When calling or emailing the LBD Caregiver Link, you will speak with an experienced caregiver who can provide information on LBD and who can also share their personal experience and compassion.Please leave a message and an LBDA volunteer will return your call within 24-48 hours.

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Toll-Free Hot Line at the AFA (Alzheimer's Foundation of America)

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AFA's toll-free hot line provides information, counseling by licensed social workers and referrals to community resources across the nation.

The hot line operates during regular business hours—Monday through Friday, 9 am to 5 pm (ET). During these hours, social workers are available by phone, as well as via Skype and live chat; to connect via Skype and live chat, click here. At all other times, please leave a message and we will return your call. To ask a question via e-mail, click here. If your situation is an emergency, please dial 911 when appropriate.

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http://www.fulllifecare.org/

Welcome to Full Life Care – formerly ElderHealth Northwest. Full Life helps adults of all ages with chronic illnesses, physical or developmental disabilities. We are a not-for-profit organization dedicated to improving people’s lives and supporting caregivers. Since the 1970s, we have helped thousands of individuals preserve their dignity and avoid living in a nursing home or in isolation.

This is a great organization. My Dad visited them for years and got a lot of support through their Men's Support Group. I highly recommend them for help and support of your loved one.

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Call 800.272.3900 to speak with a trained Helpline specialist who will provide emotional support and appropriate referrals to local resources in the 23 counties served by the Association. All calls are confidential.

About Me

I'm a writer, caregiver advocate, hospice/bereavement counselor and care manager for my father, who suffers from Lewy Body Dementia. I think it's important to talk about caregiving from my point of view as a member of Generation X. I also think it's important to spread the word on what Lewy Body dementia is, and how to deal with it effectively.
Some names, dates, details have been altered due to memory discrepancies, to maintain privacy, and to ensure narrative flow.